1. < Autoimmune Diseases

ANA positive then negative then positive...

Posted by comptomama @comptomama, Sep 8, 2022

I have spent my whole adult life with strange symptoms. As a child I would get high fevers and I would have bouts of Alice in Wonderland Syndrome. It was feeling like my body parts would get big then small. I also experienced "seeing" shapes get big and small. I was not actually seeing this. My eyes are closed and I would visualize it against my will. It caused quite a bit of anxiety for me. But it went away as I became a teenager. Then I started having skin issues. It looked like eczema. It was so itchy. I got it on my arms and fingers. When I was in my 20s I started having hip pain. Diagnosed with bursitis. This was the first time I had a positive ANA result. I seemed to become allergic to the sun especially when I was pregnant. I would get those itchy eczema like bumps on my chest. I also had a yeast or fungus all over my back and chest only when pregnant. Curiously my sister had the same experience 10 years later during her pregnancies. It was quarter size circles all over that were intensely itchy. I have an itch on the bottom of my big toe that has come and gone for 26 years. The same toe started getting numb in 2010. I started experiencing pain in my shin and a doctor said it could be ms. I brushed it off (no insurance) Then in 2012 , I was having pain in both legs. I elevated them and went to sleep. When I awoke, I had pain, numbness and tingling and trouble coordinating my legs to walk. It was both legs from my feet to my thighs. It has been 10 years and I have experienced pain numbness and tingling everyday since. Anf the AIWS came back. I have seen countless doctors. I have had MRIs of my full spine. My ana goes back and forth from positive to negative. My titer is 1:80 which is low. Doctors have literally said healthy people can have a positive ana. I am not healthy. Makes me angry. I take 600 mgs of gabapentin to help some pain. I do not want pills. I want a diagnosis. Idiopathic neuropathy is my diagnosis which is no diagnosis at all. It is a symptom of something. I do have CKD stage 3. My grandma had lupus and CKD and died from ILD at 77. My uncle had ILD and died at 68. My mom and brother also have CKD. My son and daughter have CKD. My son also has celiac disease. It all sounds hereditary and autoimmune to me. I get sick of doctors who just want my co-pay. Blood work looks good see ya in 6 months... Do my symptoms and family history make sense to anyone? Sorry for the long post.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

oakwoman | @oakwoman | Jun 15, 2023
In reply to @dlydailyhope "@oakwoman, good luck at the dermatologist tomorrow. I read on Medical News Today that some potential..." + (show)
@dlydailyhope

@oakwoman, good luck at the dermatologist tomorrow.

I read on Medical News Today that some potential complications of shingles include:

hearing problems (I have had hearing loss in one ear)
vision problems (I have blurry vision at times)
brain inflammation (I have many headaches)
pneumonia (haven't had this)
postherpetic neuralgia (PHN) (definitely have this)

Contacting the right shingles specialist can help improve recovery time and reduce the risk of long-term complications. You definitely want to prevent infection of the sores on your foot which could further complicate things.

I have experienced nerve pain for many years, and know how painful it can be (spinal stenosis, shooting nerve pain down back/legs/feet, shingles on face, etc.). There are medications, like valacyclovir, that can help relieve some of the shingles nerve pain (may take for some time and then as needed for flares). There are also anti-anxiety/depression medications that can help with nerve/chronic pain (I have been taking Cymbalta/duloxetine for over 2 years and it did help). Chronic pain can really impact your mental health.

It seems like despite getting the shingles vaccine, your body reacted to Nucala (even if you stopped taking it) and if you had chicken pox in the past, the virus reactivated to cause you shingles. I didn't get the shingles vaccine but had chicken pox as a kid. When I was prescribed prednisone back in 2015 due to mysterious eye/lip swelling, I stopped taking it after 2 days due to extreme fatigue/weakness symptoms only to have my body attack itself and extremely painful blisters/sores erupted on my face and I lost a big patch of hair (my hair dresser told me several weeks later it was like a quarter size totally bald on back of head...alopecia areata...would have never known if he didn't tell me). Thyroid levels were normal at the time. The starting and abrupt stopping of prednisone (which I never took before) really awakened the shingles virus and autoimmune symptoms and have had many problems since. Not sure if Nucala did this to you.

Jump to this post

All that you described was most familiar to my condition. I was not diagnosed with shingles at all by any of the doctors I've seen. With all that I have read I believe the shingles shot along with nucala triggered the response that I am getting in my skin. The descriptions of PHN and shingles in general are exactly what happened to me. I also read that people who took the shingles shot should not have taken nucala!! So too bad my doctor didn't do his research. Then I would not have gotten the shingles shot before I started nucala.
Now I have to figure out all of this on my own. I thank you for the information in your post. It made me feel so much better knowing WHAT the pain is all about. It gave me some hope. I had not heard of PHN before and now at least I have a reference to take to the dermatologist tomorrow. God bless

REPLY
dlt | @dlt | Jun 16, 2023

I have been positive. Six months later negative and told see you in a year. I also am hypothyroid and recently told I have degenerative spine.

REPLY
1 reply
dlydailyhope | @dlydailyhope | Jun 16, 2023
In reply to @dlt "I have been positive. Six months later negative and told see you in a year. I..." + (show)
@dlt

I have been positive. Six months later negative and told see you in a year. I also am hypothyroid and recently told I have degenerative spine.

Jump to this post

@dlt, when I was in my early 40s (over 10 years ago), I started having pain in my lower back/hip. Never had pain before. I had blood work done at the time and it showed positive for ANA/RA but dismissed by a rheumatologist who thought I was just depressed (seriously??!!). After not getting anywhere with doctors and being dismissed, I went on my own to a spine doctor to get a MRI. I was told I had a spine of someone in my 60s and severe congenital spinal canal stenosis!! Not sure what was causing that kind of degeneration. That was scary when I was only in my early 40s with a toddler. I do think hormone changes in pregnancy triggered autoimmune issues for me impacting my spine/joints, causing pain, etc. I am also now hypothyroid and confirmed to have Hashimoto's thyroiditis through lobectomy surgery last year to remove a suspicious nodule (which I accidentally found on my own CT scan report when paying a bill...no doctor raised this to me!).

My very expensive blood work done by a new rheumatologist in 2017 showed auto-antibodies attacking my thyroid and elevated inflammation/RA but did nothing. They told my primary doctor I was fine and just to "keep an eye on her thyroid." I did not feel fine. My ANA was also negative/non-reactive in between all of this so not sure if it was an error or if ANA detection in blood work changes with the timing of flares.

It can be frustrating in our health care system to just sit, wait, suffer, waste time/money with no improved quality of life. We just want to feel better and know what is going on with our bodies and what to do/not do. Doctor's treat disease and prescribe pills. They do not know how (and/or insurance companies make it hard for them) to be preventative/proactive in diagnosing and treating things early or taking time to educate their patients (we are on our own to look things up online but some doctors get angry when we do but there is a clear gap). No wonder our health care system is so expensive with so many people unhealthy. Throwing more money at this problem is not going to fix it.

If you are early in your diagnosis for hypothyroid/degenerative spine, I highly suggest you read everything you can about your conditions and what you can do to prevent further decline (reduce triggers/inflammation in your body through diet/nutrition/exercise/stress management/sleep/supplements/self care, etc.). We go to doctor's seeking guidance/advice and walk away empty handed, confused and frustrated. We all really need to educate ourselves and see if there are things within our control we can/should do to improve our health as best as we can on our own and not wait for our doctors to help us holistically. Many years can go by without any improvement (and possible worsening) of our symptoms.

Good luck to you on your health care journey!

REPLY
2 replies
lapato | @lapato | Jun 17, 2023
In reply to @dlydailyhope "@dlt, when I was in my early 40s (over 10 years ago), I started having pain..." + (show)
@dlydailyhope

@dlt, when I was in my early 40s (over 10 years ago), I started having pain in my lower back/hip. Never had pain before. I had blood work done at the time and it showed positive for ANA/RA but dismissed by a rheumatologist who thought I was just depressed (seriously??!!). After not getting anywhere with doctors and being dismissed, I went on my own to a spine doctor to get a MRI. I was told I had a spine of someone in my 60s and severe congenital spinal canal stenosis!! Not sure what was causing that kind of degeneration. That was scary when I was only in my early 40s with a toddler. I do think hormone changes in pregnancy triggered autoimmune issues for me impacting my spine/joints, causing pain, etc. I am also now hypothyroid and confirmed to have Hashimoto's thyroiditis through lobectomy surgery last year to remove a suspicious nodule (which I accidentally found on my own CT scan report when paying a bill...no doctor raised this to me!).

My very expensive blood work done by a new rheumatologist in 2017 showed auto-antibodies attacking my thyroid and elevated inflammation/RA but did nothing. They told my primary doctor I was fine and just to "keep an eye on her thyroid." I did not feel fine. My ANA was also negative/non-reactive in between all of this so not sure if it was an error or if ANA detection in blood work changes with the timing of flares.

It can be frustrating in our health care system to just sit, wait, suffer, waste time/money with no improved quality of life. We just want to feel better and know what is going on with our bodies and what to do/not do. Doctor's treat disease and prescribe pills. They do not know how (and/or insurance companies make it hard for them) to be preventative/proactive in diagnosing and treating things early or taking time to educate their patients (we are on our own to look things up online but some doctors get angry when we do but there is a clear gap). No wonder our health care system is so expensive with so many people unhealthy. Throwing more money at this problem is not going to fix it.

If you are early in your diagnosis for hypothyroid/degenerative spine, I highly suggest you read everything you can about your conditions and what you can do to prevent further decline (reduce triggers/inflammation in your body through diet/nutrition/exercise/stress management/sleep/supplements/self care, etc.). We go to doctor's seeking guidance/advice and walk away empty handed, confused and frustrated. We all really need to educate ourselves and see if there are things within our control we can/should do to improve our health as best as we can on our own and not wait for our doctors to help us holistically. Many years can go by without any improvement (and possible worsening) of our symptoms.

Good luck to you on your health care journey!

Jump to this post

Completely agree with you! And I have 2 doctors in my immediate family …but I have come to the conclusion that the system has treated physicians so poorly and favor pharma and hospitals instead, that they are discouraged, unwilling and finally they are abandoning their careers. That is why I subscribe to this site. To help me understand my issues and to choose my doctors carefully.

REPLY
susanjc8 | @susanjc8 | Jun 20, 2023

Absolutely familiar! I could have written your post myself, almost verbatim. You have to get yourself to a GOOD rheumatologist! Mayo, or another good teaching hospital. Then you must advocate for yourself. If you don't get a diagnosis and treatment plan, ask for a referral to someone who may be more suited for your symptoms. Don't let the docs off the hook if they can't come up with a diagnosis and treatment plan.

REPLY
wlc222 | @wlc222 | Jun 21, 2023
In reply to @dlydailyhope "@dlt, when I was in my early 40s (over 10 years ago), I started having pain..." + (show)
@dlydailyhope

@dlt, when I was in my early 40s (over 10 years ago), I started having pain in my lower back/hip. Never had pain before. I had blood work done at the time and it showed positive for ANA/RA but dismissed by a rheumatologist who thought I was just depressed (seriously??!!). After not getting anywhere with doctors and being dismissed, I went on my own to a spine doctor to get a MRI. I was told I had a spine of someone in my 60s and severe congenital spinal canal stenosis!! Not sure what was causing that kind of degeneration. That was scary when I was only in my early 40s with a toddler. I do think hormone changes in pregnancy triggered autoimmune issues for me impacting my spine/joints, causing pain, etc. I am also now hypothyroid and confirmed to have Hashimoto's thyroiditis through lobectomy surgery last year to remove a suspicious nodule (which I accidentally found on my own CT scan report when paying a bill...no doctor raised this to me!).

My very expensive blood work done by a new rheumatologist in 2017 showed auto-antibodies attacking my thyroid and elevated inflammation/RA but did nothing. They told my primary doctor I was fine and just to "keep an eye on her thyroid." I did not feel fine. My ANA was also negative/non-reactive in between all of this so not sure if it was an error or if ANA detection in blood work changes with the timing of flares.

It can be frustrating in our health care system to just sit, wait, suffer, waste time/money with no improved quality of life. We just want to feel better and know what is going on with our bodies and what to do/not do. Doctor's treat disease and prescribe pills. They do not know how (and/or insurance companies make it hard for them) to be preventative/proactive in diagnosing and treating things early or taking time to educate their patients (we are on our own to look things up online but some doctors get angry when we do but there is a clear gap). No wonder our health care system is so expensive with so many people unhealthy. Throwing more money at this problem is not going to fix it.

If you are early in your diagnosis for hypothyroid/degenerative spine, I highly suggest you read everything you can about your conditions and what you can do to prevent further decline (reduce triggers/inflammation in your body through diet/nutrition/exercise/stress management/sleep/supplements/self care, etc.). We go to doctor's seeking guidance/advice and walk away empty handed, confused and frustrated. We all really need to educate ourselves and see if there are things within our control we can/should do to improve our health as best as we can on our own and not wait for our doctors to help us holistically. Many years can go by without any improvement (and possible worsening) of our symptoms.

Good luck to you on your health care journey!

Jump to this post

Totally can relate to your story !!!! So frustrating.

REPLY
ceeartnrose | @ceeartnrose | Jun 25, 2023

I have gone through something similar. I have been diagnosed with a lot of different things.
Lupus is one of them, my test was positive twice and negative once.
However my C4 is low. My body is riddled with osteoporosis, osteoarthritis, I have issues with my kidneys, I have a fatty liver, Barretts Esophagitus. But yet, I have been told I don't have an auto immune disease from doctors, but some say I do, It's quite frustrating. I have fatigue, extreme muscle pain and tendinitis.
Something isn't normal when adding this together.
I'm sorry you are dealing with the same.

REPLY
evergreen2022 | @evergreen2022 | Jun 26, 2023

I am so sorry. Yes. Some of the doctors that is true about the money. Or HMO patient numbers. But not all of them. I think for some of us there either is no answer, or there is more than one answer. I wish I knew what to tell you but the best I can advise, find a doctor who believes in you and tries to help the symptoms.

REPLY
evergreen2022 | @evergreen2022 | Jun 26, 2023

By the way, I did find a doctor who believed. Two visits later, he determined I had serum-negative rheumatoid arthritis. My primary doctor doesn't even think I have fibromyalgia as I was diagnosed with many years ago. He said doctors went from not believing it was a "thing" to making it a dumping ground. I don't know what state you are in but if you are in Texas it is Dr. Pedro Castillo. He is a warm and wonderful man as well. Does his own shots so no pain dr needed. He is at UTSouthwest Rheumatology Associates Group in Dallas. You have to keep believing in yourself. This disease makes you miserable. It causes many different types of problems. Don't give up. Let us know.

REPLY
evergreen2022 | @evergreen2022 | Jun 26, 2023

And another thing, lol, I keep forgetting things, he told me I was only the third Serum negative RA patient he had ever had. The tests will always be negative. Although early on, my very first Rheumatologist was right. He did it three times. This is years ago. It was positive twice and negative once. They should not depend on tests alone.

REPLY
View MoreView Less
Please sign in or register to post a reply.